Every 4 minutes,one person in India is newly diagnosed with leprosy.

Every 4 minutes, one family faces the potential threat of social exclusion due to the acute stigma attached to leprosy.

People affected by leprosy are often denied their basic human rights. There are regular reports of people affected by leprosy being thrown off public transport and from the land on which they live. They are often sacked from their jobs and their children prevented from going to school. Even those begging for survival shun people displaying leprosy-affected disabilities. Additionally, the legislative framework also actively discriminates against them.

Let's end this!

Petition to Shri Narendra Modi, Prime Minister of India

To pass legislation to end devastating discrimination of persons affected by leprosy and promote their social inclusion. Please show your solidarity with those who struggle to be heard by signing this petition. Read the letter.

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Why it matters?

Leprosy is the oldest infectious disease known to humankind and India alone contributes 58% of the global leprosy load, and on an average 1,25,000 new leprosy cases are diagnosed in India every year.

People affected by leprosy are often denied their basic human rights. There are regular reports of people affected by leprosy being thrown off public transport and from the land on which they live. They are often sacked from their jobs and their children prevented from going to school. Even those begging for survival shun people displaying leprosy-affected disabilities. Additionally, the legislative framework also actively discriminates against them.

It doesn’t have to be this way. Since 1982, leprosy is a curable disease. Yet a combination of lack of knowledge, unfounded religious myths and stigma results in people hiding the early symptoms of leprosy to avoid being outcast from their family and community. The disease then progresses unchecked causing terrible disabilities and blindness as well as heart-breaking rejection. There are around two million people living with irreversible leprosy-caused disabilities in India as a result of late treatment.

Recently the Law Commission of India submitted its report 256 to the Government of India. The report also contains a draft Bill titled Eliminating Discrimination against Persons Affected by Leprosy (EDPAL) Bill, 2015 for repealing or suitably amending all laws discriminatory towards people affected by leprosy.

The parliament needs to enact a legislation that promotes social inclusion of people affected by leprosy through affirmative action and passing the EDPAL bill as a law.

EDPAL Bill has to be passed in the Parliament for it to become a law. Also, the Parliament has to enact a legislation that promotes social inclusion of people affected by leprosy through affirmative action, as recommended by the Law Commission.

We need your support in asking Shri Narendra Modi, Prime Minister of India, to get these actioned during this Parliament. Please show your solidarity with those who struggle to be heard by signing this petition.

Read more about the social and legal discrimination faced by people affected by leprosy, and the Law Commission’s report, ‘Eliminating Discrimination against Persons Affected by Leprosy’ (Report No.256 dated April 7, 2015).

Some Facts and Reports

Leprosy History

Leprosy (also known as Hansen’s disease) has a history of about 3,500 years and is the oldest infectious disease known to mankind. For centuries, it remained incurable. However, in 1982, a cure for the disease was found. Without a cure, leprosy causes serious disabilities in the infected persons. The widespread fear and misconceptions about the disease continue till date.

Some facts about leprosy

Leprosy is caused by a slow-growing bacillus, Mycobacterium Leprae. It is transmitted through droplets from the nose and mouth of untreated patients with a severe form the infection. Leprosy affects the peripheral nervous system and skin, and if left untreated, the disease can cause nerve damage, leading to permanent disabilities. However, leprosy is not highly contagious, and 95% of people have a natural immunity to it. Leprosy is completely curable with multi-drug therapy (MDT), a combination of three drugs is available in government-run Primary Healthcare Centres (PHCs), free of cost, throughout India. The period of treatment ranges from six months to one year.

Social discrimination due to leprosy

There is a strong social stigma attached to leprosy. Many feel that leprosy is the result of one’s past sins, which actually is a myth. Unfortunately, ancient prejudices that leprosy is some form of divine curse, which draw upon sacred texts from all the major religions, are still widely prevalent.

Because of the social stigma, people affected by leprosy are not easily accepted in society. They are often marginalised, and many of them live isolated lives in leprosy colonies, in abject poverty without any source of income. For many, begging is the only source of livelihood. The stigma also affects the lives of the family members, especially children of people affected by leprosy.

World Health Organisation (WHO) reports say that India accounts for 58% of leprosy cases in the world. National Leprosy Eradication Programme (NLEP) ,Government of India, reported the following for 2014-15:

This means, every four minutes, one person in India is newly diagnosed with leprosy. This underscores the fact that every four minutes, one family faces the potential threat of social exclusion due to the acute stigma attached to leprosy. Although accurate numbers are unknown, there are estimated to be 850 leprosy colonies and 10 – 12 million people affected by leprosy in India.”

Discrimination in law due to leprosy - Lepers Act, 1898

In India, there are several laws that still discriminate against people affected by leprosy. The British in colonial India had passed the ‘Lepers Act, 1898’ which segregated leprosy patients to control the spread of the disease. Contrary to general perception, the Lepers Act continues to exist on the statute books of India, both at the central and state levels, even though some states (Assam, Gujarat, Himachal Pradesh, Karnataka, Maharashtra, Meghalaya, Nagaland, Orissa, Punjab, Tamil Nadu, Tripura and West Bengal) and Union Territories (Andaman and Nicobar Islands, Chandigarh, Delhi, Dadra and Nagar Haveli and Lakshadweep) have repealed its application within their respective jurisdictions. The Law Commission recognised that the Lepers Act is completely out of sync with the modern understanding of leprosy and its treatment through MDT. As a result of its observations, in its Second Interim Report No. 249 on “Obsolete Laws: Warranting Immediate Repeal”, the 20th Law Commission recommended the repeal of the Lepers Act, 1898, for being in violation of Article 14 of the Constitution, owing to the forcible exclusion and segregation of persons affected by leprosy under the Act. Currently, this proposal is under consideration of the Parliament.

Other discriminatory laws framed on the basis of Lepers Act, 1898

There are 14 other laws that also carry similar provisions of exclusion and segregation following the basis laid down in the ‘Lepers Act, 1898’. These provisions are still in force, and they continue to discriminate against people affected by leprosy. These laws allow leprosy as a ground for divorce, discriminate against people affected by leprosy who resort to begging for livelihood, bar them from contesting elections, provide for charging higher life insurance premium from them, stop them from travelling in trains, obtaining driving licences, etc.

The Right of Participation in Political Life

Andhra Pradesh Panchayati Raj Act, 1994

Chhattisgarh and Madhya Pradesh Panchayati Raj Act, 1993

The Rajasthan Panchayati Act, 1994

The Rajasthan Municipality Act, 1959

The Right to Marriage and Family Life

Hindu Marriage Act, 1955 [Section 13 (1) (IV)]

Dissolution Of Muslim Marriage Act, 1939 [Section 2 (VI)]

Indian Divorce Act, 1869 [Section 10]

Indian Christian Marriage Act, 1872 (­The divorce of Christian spouses is governed by the Provisions of the Indian Divorce Act, 1869)

Special Marriage Act, 1954 [Section 27 (g)]

Hindu Adoption and Maintenance Act, 1956

Right to Employment

Industrial Disputes Act, 1947 [Sc 2]

Right to Inclusion

Prevention of Begging Act, 1959

Mumbai Municipal Corporation Act, 1888

Use of Appropriate Language

Prevention of Begging Act, 1959 >>> see Act No. 12 above

Right to Freedom of Movement

Indian Railways Act, 1989 [Sc 56]

The Law Commission of India intervenes

Due to persistent awareness raising initiatives and lobbying by an NGO working in the field of leprosy, the Law Commission submitted its report for ‘Eliminating Discrimination against Persons Affected by Leprosy’ (Report No.256 dated April 7, 2015) to Mr D.V. Sadananda Gowda, Hon’ble Minister for Law and Justice, Government of India. This report also contains a draft Bill, titled, ‘Eliminating Discrimination against Persons Affected by Leprosy (EDPAL) Bill, 2015’ for repealing or suitably amending all discriminatory provisions towards people affected by leprosy in the various laws of the land.

Apart from recommending repealing of discriminatory laws, in its report, the Law Commission has recommended the government to enact a legislation that promotes social inclusion of people affected by leprosy and their family members through affirmative action. This includes:

Measures to end discrimination of people affected by leprosy.

Providing land rights to inhabitants of leprosy colonies.

Safeguarding the right to employment of people affected by leprosy.

Providing educational and training opportunities to children and young people from leprosy background.

Discouraging the use of the term ‘leper’ and using appropriate language to refer to people affected by leprosy.

Ensuring right to freedom of movement of people affected by leprosy (by amending Indian Railways Act, 1989 and Motor Vehicles Act, 1988).

Providing monetary support for travel, lodging and medicines to people affected by leprosy so that they continue treatment for the prescribed duration.

Raising public awareness on leprosy, its treatment and its curability, through campaigns and programmes to reduce the stigma attached to leprosy.

Introducing welfare measures, like providing unemployment benefits, health insurance or other such social insurance on account of leprosy, counselling during treatment, etc, and to strictly monitor their implementation.

The centuries-old stigma and socio-legal discrimination towards people affected by leprosy will end only if the Parliament passes ‘Eliminating Discrimination against Persons Affected by Leprosy (EDPAL) Bill, 2015’ for repealing all laws discriminatory towards people affected by leprosy and to enact a legislation that promotes social inclusion of people affected by leprosy and their family members through affirmative action, as recommended by the Law Commission of India.

About United4Change

People & organisations across India and worldwide, working in the field of leprosy, have united to support a powerful petition, that will change the lives of people affected by leprosy forever!
United4change is an initiative of organisations and people who share a common passion – to end the social and legal discrimination faced by people affected by leprosy due to the age-old stigma associated with leprosy, and empower them to live a dignified life.Because we believe that the power to change lies within each one of us, and collectively, we can bring the change we want to see….India without leprosy!